Survivorship

After a cancer diagnosis, a person’s priorities regarding relationships, career, or lifestyle may change. Some people with a history of cancer, often called cancer survivors or survivors, say that they appreciate life more and have gained a greater acceptance of self. At the same time, some survivors also become anxious about their health and uncertain of how to cope with life after treatment, especially when regular visits to doctors stop.

Defining survivorship

Surviving cancer or “survivorship” can be defined in different ways. Two common definitions include:

Having no disease after the completion of treatment,

The process of living with, through, and beyond cancer. By this definition, cancer survivorship begins at diagnosis. It includes people who continue to have treatment to either reduce risk of recurrence or to manage chronic disease.

Sometimes, doctors and nurses use terms to describe the specific period a survivor is experiencing. These can include:

Acute survivorship: describes the time when a person is being diagnosed and/or in treatment for cancer

Extended survivorship: describes the time immediately after treatment is completed, usually measured in months

Permanent survivorship: describes a longer period, often meaning that the passage of time since treatment is measured in years

Sometimes, people who have survived cancer consider their close friends and families “co-survivors” because of the experiences they have had in caring for the person with cancer. Others with metastatic cancer don’t feel that the “survivor” label applies to them because they continue to live with cancer every day. No matter how it is defined, survivorship is unique for each person.

Survival statistics

The number of people with a history of cancer in the United States has increased dramatically, from 3 million in 1971 to about 13.7 million today. Of these, an estimated 379,112 are survivors of childhood and adolescent cancer, which means they were diagnosed before the age of 20. About 68% of today’s cancer survivors were diagnosed with cancer five or more years ago. And, approximately 15% of all cancer survivors were diagnosed 20 or more years ago. More than half of cancer survivors are 65 or older. And an estimated 1 in 530 adults between the ages of 20 and 39 is a survivor of childhood cancer.

Most cancer survivors were initially diagnosed with common cancers. For example, 22% of survivors had breast cancer, 20% had prostate cancer, 9% had colorectal cancer, and 8% had cervical, uterine, or ovarian cancers.

The increase in survival rates is largely thought to be due to the following four developments:

At the end of active treatment, many survivors often have mixed emotions, including relief that their treatment is over, as well as anxiety about the future. After treatment, the “safety net” of regular, frequent contact with the health care team ends. Some survivors may miss this source of support, especially because anxieties may surface at this time. Others may have physical problems, psychological problems, sexual problems, and fertility concerns. Many survivors feel guilty about surviving, having lost friends or loved ones to the disease. Some survivors are uncertain about their future, while others experience discrimination at work or find that their social network feels inadequate. Find out more about coping with such concerns. Learn more about the next steps to take in survivorship.

Fear of recurrence

Fear of recurrence (cancer that comes back after treatment) is common among most cancer survivors. It may lead a person to worry over common physical problems, such as a headaches, coughs, and joint stiffness. It is hard to know what is “normal,” and what needs to be reported to the doctor. Discussing the actual risk of recurrence with your doctor and the symptoms to report can often lower your anxiety. Maintaining a regular schedule of follow-up visits can also provide a sense of control. Although many cancer survivors describe feeling scared and nervous about routine follow-up visits and tests, these feelings may ease with time.

Relationships

When active treatment is over, some survivors need different types of support than they had before. Some friends may become closer, while others distance themselves. Families can become overprotective or may have exhausted their ability to be supportive. Relationship problems that may have been ignored before cancer can surface. The entire family is changed by the cancer experience in ways they may not be aware of. Recognizing and working through these changes are needed to help you get the support you need, and some people find that counseling helps. Open and ongoing communication helps with adapting to life and shifting relationships after cancer. Learn more about relationships and cancer.

Getting back to “normal”

Returning to a regular work schedule is a sign of getting back to a normal routine and lifestyle. Many people with cancer who took time off for treatment return to work afterwards, while many others may have worked throughout treatment, and others may not be able to return to work because of the effects of the cancer or its treatment. Most people need their job and the health insurance it provides.

Although many survivors can be as productive as they were before treatment, some find they are treated differently or unfairly. Learn more about dealing with discrimination. During and after treatment, it may be helpful to anticipate questions from coworkers, and decide how to answer these questions in advance. Coworkers may want to help but not know how. It may be up to you to start the conversation and set the limits. When and how you choose to discuss a diagnosis is a personal decision. Find out more about sharing your story.